Today I was caught out and reminded how much my self-identity has changed in one year. A year ago my identity was: Academic, scholar, writer, lesbian, athlete, partner, gay Christian, and business owner. Our world, our society is one in which what you DO, what you print, what job position you hold and what opinions you hold are paramount. Your opinion from feminist theory, queer history, literary or cultural criticism, right down to your views of TV shows or movies is based on who ARE you exactly, and what have you done, what are your credentials.
Last year I made money going back and forth from Port Angeles mailing items from Ebay, I made several hundred a month (a couple days work, enough to pay for Epee), I met some ebay sellers who offered to fly me to their state to help them with their business. I used to see killer whales so often that when people crowded to the windows I didn’t even bother to look over. I spent tens to hundreds of hours editing a novel to send to Arsenal Press. I wrote small articles and was working on academic papers. There was an academic conference in Oregon I was thinking about going to. I was looking at different jobs.
And then I became God.
Hey, that was a more interesting sentence than saying my world changed. They say that when the scales fell from Paul’s eyes the world had changed. Whatever your religion there usually is some sort of reminder that we are but grass, or flowers that bloom then fade. I became sick, and sicker, and was sucked into a system in which the only importance is the person evaluating you; the only significance of you is that you are there. Before you were that list: Academic, blah, blah. Now you are just “a patient, XX years of age, displaying…” You get sicker and people come to help, not because you did things of worth, or because you are special or deserving but because you are in a system, and that system will sometimes save you and sometimes fail you.
But then you rise above the system; you become yourself again. Only now, you have a list of new names attached to you Elizabeth McClung: Nerve Damage, Autonomic Failure, Degenerative, Secondary Raynaud's, Assisted Bathing and Eating, Terminal. And while this does not define you it does dictate a great deal of your day. And you rise again.
People say, what would you do if you had one day left to live? And some would take trips and some would get drunk and some say they would go back to work and live the day as normal. But really, this isn’t something you can answer until you know. Not knowing just because of the health stats or doctor judgements but in what you see and feel on a daily basis that every day and every week and every month is quite realistically the last. And then how important is it if people don’t care that you used to be or may be one of the top researchers of pulp Victorian non-linear storytelling? How important is it that you came in 6th or 7th at this or that tournament? How important, compared with spending the evening with your partner, the person you love, that you wrote a book and got accolades? Not at all. And you would trade it all to be out of the wheelchair and the hospital bed to simply be awake 18 hours a day, to have a job sweeping a broom and be able to walk across a field of flowers while walking home the one you love. But you don't have that trade to make.
So then you rise.
Because, like being left handed, or having bad vision, you can’t refuse to accept all those medical things attached to you now, but you can’t live there either. So when the medical tests and the appointments start to clear and you realize that yeah, all that stuff before seemed really big and you remember the conversations you had which were SO IMPORTANT a year ago and would make you break out in hysterical laughter now. Oh no, are people really drinking at Starbucks instead of Independent coffee houses!? Don’t people understand that many of the ideas brought up in the hit TV show Supernatural is ripping off (inaccurately) ideas brought forward by Victorian writers, and Wilkie Collins in particular? Hahaha! Is that really what I spent my time doing?
I always wanted to work with the group Doctors without Borders: the idea of no recognition but the need comes first. I guess, you might say I inherited a home project: Every day, I work at saving a life, at keeping a series of lives in balance; not just me but my caregivers and inherited family. I would like the chance to finish editing that novel and write another one. But right now I have a more important job; in one year, I have had the chance to experience what would take even most neurologically ill people several years: from hope to terror and back again. I need to get that down. That is important. Several people, including my home care worker say, "You can speak for those who cannot." I don't know. But if by telling my story again and again I can, then I will try.
Next week is the anniversary of the last time I was able to WALK outside the door of my apartment. I went four blocks, resting frequently and took a picture of some early flowers blooming. A year ago next week.
I used to be anguished by the question: What purpose does this serve? I could not see why I was sick, I could not understand how or why I was this way when I was SO TALENTED, when I could do SO MUCH ELSE. Now, I look back at the life before this year and I ask, “What purpose did it serve?” The world didn’t need me, in fact, in the ego centric view of society, I think we all fool ourselves that we are needed as much as we hope we are.
I do things now because I believe them to be worth doing. I post because I WANT to, not because I am serving the greater good or doing something amazingly important but because I want to know what everyone from Kathz to Ms. Bond are going to say, I want to hear from Raccoon and Cheryl, from Lindsay, Dawn and Lilwatchergirl. I can’t list all the names that I look for. Is this important? It is to me. It is to Linda.
I don’t live for today, I don’t live as if this is my last day, or last week or last year. Yet I believe that I will make what difference I make because people are amazing and oddly, it is the ones who don’t get paid who seem to care the most. I am not going Zen (sorry Neil), I am not going mystic, I am going practical. What is better than an evening with pain at a manageable level, and knowing that I have fulfilled the goals I set for that day. Plus I have some ice cream to eat. And maybe tomorrow the sun will shine, and I will feed a squirrel. Or I could be doing an all-nighter to crank out another paper to make sure my publishing credentials for this year will look good on my resume.
Hahaha! Seriously, didn’t that last line crack you up? I used to think like that. I used to act like that.
My retort: I just kissed Linda.
I do wish I could see the whales again though. Too bad I was so busy being important and busy. What a prima donna. Think I will go kiss Linda again.
16 hours ago